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14 Replies
txsunsets - September 16

I am 41 yrs old and just recently been diagnosed with FMS back in Jan although I feel I have been suffering from this for a long time. Like everyone else dr told me there wasn't anything wrong with me. I have no clue where to turn. There is only a couple of dr here that even treat this illness. I went to one and he is so timid about FMS he just basically told me to continue doing what I am doing and I will be fine. I am taking Nuerotin and that is it. However, I am not fine. The other dr is not in my network of course and would expect me to pay out of pocket which i can't afford. I suffer from body pains, migraines that last days, IBS, vision flurries, weight gain, etc.... I have tried finding support groups in my area and there aren't any. My family tries to be supportive but they don't and can't completely understand what i am going thru. Sorry, I really don't have a question. Just having a bad week. Just needed to talk a little i guess.

 

ibritz - September 16

It is very frustrating. Contact your insurance company. (See if they will assign you a case worker)/ Explain what is going on and that there is only 1 doctor in your area that treats FM. See if they will allow you to see another doctor and approve it for in network benefits. I assume you have looked in to Rheumatolgists, Physical med docs, internists. If not try looking into those docs as well. I hope you find some help. Good luck - God bless you!

 

txsunsets - September 17

Ibritz, yes i have checked into different types of doctors. The Rheumatologist is the one that told me to continue doing what i am doing and i will be fine. I am having problems with my insurance company because like a lot of people they think that i was diagnosed with fibro just because they can't find anything wrong with me. They don't seem to understand the illness. I appreciate you answering me. I really don't have anyone to talk to about what I am going thru. God bless you too

 

Fantod - September 17

Hello- Have you tried calling your local hospital to see if they can steer you to a support group or another doctor in your network? You might also go to the National Fibromyalgia Association website. They could help you with a fibro friendly doctor in your area. Have you taken the time to read through the posts of this site? There is a lot of good information here. Share the site with your family and friends so they get a better idea from other people how hard is can be to deal with FMS. Your doctor could certainly be doing more to improve your quality of life. You could be using amitriptyline to help with sleep and Cymbalta or Lyrica to help with pain. Unfortunately, there are still a lot of doctors out there who are uninformed. You have to be your own advocate for getting better care. Print some articles out and go back and ask him to assist you with some of these issues. Iwish you better days ahead. Take care.

 

Shau Marie - September 17

I feel your pain! I was diagnosed with Multiple Sclerosis more then 11 years ago. I have been suffering with these new symptoms for several years and have had two major surgeries in less then 11 months. I am on my 3 specialist and they think it is Fibro or Lupus, but no diagnosis yet. I guess it is a flare low grade fever, lots of pain and many symptoms to numerious to mention. I know I can beat whatever it is, but I have to know what I am battling. I am hear to vent to ar talk with. I know it sounds silly, but I really do feel your pain. Literally!

 

txsunsets - September 17

Fantod, I have searched for doctors in my area but i guess i am stuck with going out of town which means i have to take off more work. It's weird with my family. They know i have this illness and they feel bad for me but that is as far as it goes. I try to talk to them about the intensity of the pain i feel but like i said they change the subject. I'm not sure if they are in denial or what. It would help if i had someone to talk to that understands what i am going thru. I am grateful i found this site.

 

txsunsets - September 17

Shau Marie, OMG I am so sorry. I can't imagine the difficulties you have and are going thru. I appreciate you willing to talk with me. Sometimes that's all i want is to have someone that really understands.

 

Shau Marie - September 17

I agree that not having someone to talk to is difficult and that this is such a complicated condition. Sometimes we forget that our families just don't know what to say or do. I had a difficult time finding an MS support group in my area so I started one myself. There is always the risk that you will have a great big pity party on your hands, but it still might be the answer for you. I find that talking to people that are going through simular trials always helps me feel that I am not in it alone.

 

txsunsets - September 17

Shau Marie, I wish I had time to start a group myself but I work full time and I attend college online full time. I work for the County Attorney so I also have to do activities outside of work in order to keep my grant. I have a hard time keeping my energy level up in order to do these things. I do appreciate you talking to me.

 

Fantod - September 17

Is there a pain specialist in your network? My pain specialist and rheumotologist work together to treat me for FMS and well as some underlying problems. Maybe the pain specialist might be of more help and/or get your rheumy on the ball. Be sure to tell the next professional you see about FMS about your experience with your current rheumotologist. A little peer pressure might affect a change for the better. Honestly, if any of these people had to deal with this for just one day they would certainly act and think differently. I know what you mean when it comes to family understanding. For those folks with internet access, share this site. I think it might give them a better perspective if they read about other people's struggles with daily living and FMS. It is certainly difficult to see someone you love suffering. Nobody wants that for a close friend or family member. As far as changing the subject goes when you discuss pain many people have the misguided notion that it is better to talk about something pleasant. The bottom line is I think they just don't know how to help. You might try giving them some gentle cues like "I'm in a lot of pain today and I would really like you to just sit and listen to me. That would be so helpful. I won't feel so alone." You could also ask for some assistance with chores or something else that is overwhelming to you. Maybe if they had an idea or some direction things would change. I hope some of my suggestions are helpful. Take care.

 

ibritz - September 18

My mother got something in the mail from Fibrocenter.com. We don't know why she got it but she saved this card for me. One side says, Today your Fibromyalgia is bothering you more. It;s a BAD DAY. Then invitesyou to their website to learn something new about FM. The other side says, Today your Fibomyalgia is bothering you less. It's a GOOD DAY. So take it easy, pace yourself and don't try to do too much. Then directs you to their website. I leave this on the table near my chair. Nothing ever needs be said. My husband knows, as does anyone else in my house, what kind of day I am having. Just a thought maybe you could make your own card. Obviously, the pirmary thing for the card to say is what was on the GOOD DAY side, and then make up your own little thing for the BAD DAY side.

 

Shau Marie - September 18

I hope today is better for you. I just thought (after an evening trip to ER for chest pain) that many hospital have chronic pain or chronic illness supports groups. Maybe there is one in your area.

 

txsunsets - September 18

Shau Marie, I actually checked into Support Groups thru the hospitals but no one seems to have any. I think it is crazy.

 

Fantod - September 19

With regards to support groups in your area - check with the local library. Some support groups take advantage of free meeting space at libraries. You might also try googling "fibromyalgia (and/or chronic pain) and the name of the city where you live to see what pops up. Take care.

 

Fantod - September 19

Go to the National Fibromyalgia Association website. They have listings by state of the support groups available.

 

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